Vulvodynia Support
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Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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    » Hope to all my suffering ladies
    I think the amitriptline has failed :( EmptyFri Oct 23, 2020 12:04 am by ringostarr26

    » Please tell me this can get better
    I think the amitriptline has failed :( EmptySat Jul 18, 2020 7:38 pm by sammykramer

    » By no means cured, but doing much better!
    I think the amitriptline has failed :( EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

    » How I cured my Vulvodynia!
    I think the amitriptline has failed :( EmptySat Dec 07, 2019 11:54 am by Millie

    » 7 months since the diagnosis
    I think the amitriptline has failed :( EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    I think the amitriptline has failed :( EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    I think the amitriptline has failed :( EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    I think the amitriptline has failed :( EmptySat Jun 15, 2019 5:07 pm by mary jane

    » 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
    I think the amitriptline has failed :( EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    Gabapentin Gel. or other topical creams

    Thu May 10, 2018 9:43 am by Rosie21

    Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

    Comments: 2

    Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

    Sat Aug 01, 2015 4:17 pm by Fielder

    Hi everyone,

    I'm a newbie.  I live in the UK.  

    I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

    I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

    Comments: 11

    An absolute success story- please read!

    Fri Mar 08, 2019 10:57 pm by Persevere1990

    Dear All,

    I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

    I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

    Comments: 0

    I'm sorry im rambling

    Thu Feb 21, 2019 5:49 am by Jet227

    hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

    Comments: 1

    New member need advice please

    Thu Feb 28, 2019 11:33 pm by PANDORA123

    Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

    Thanks

    Comments: 5

    MonaLisa Touch

    Fri Feb 08, 2019 7:35 pm by rl2091

    Hi All,

    I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

    Comments: 3

    Diagnosed Recently

    Tue Jan 08, 2019 3:55 pm by flissyg

    Hi All,

    I’m so glad I’ve found a place where there are others who understand how I feel!

    So this is my story:-

    I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

    Comments: 4

    New and need advice and help

    Wed Dec 05, 2018 3:26 pm by Cin124

    Hi everyone,

    About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

    Comments: 6

    New here would very much appreciate advice at the end of my rope

    Wed Jan 09, 2019 9:09 pm by Jma990o

    This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
    So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

    Comments: 3


    I think the amitriptline has failed :(

    3 posters

    Vulvodynia Support :: Your Story

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    I think the amitriptline has failed :( Empty I think the amitriptline has failed :(

    Post  tinkerbelle2 Fri Apr 04, 2014 6:50 am

    Just got up to 75mg and had the worst week of depression I have ever experienced. Hardly able to sleep or eat when before I had no trouble sleeping even on the ami and I love food. Nothing is reassuring or comforting me Sad I am obsessing about things and having horrible intrusive thoughts.
    tinkerbelle2
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    Post  Alana3 Fri Apr 04, 2014 8:35 am

    If the lower dose was helping go back to that...

    Alana3

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    Post  tinkerbelle2 Fri Apr 04, 2014 5:32 pm

    I don't think it really was Sad
    tinkerbelle2
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    Post  Alana3 Fri Apr 04, 2014 9:08 pm

    Try something else maybe gaba?

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    Post  zarli Sun Apr 06, 2014 10:51 am

    Hi Tinks
    Sorry to hear your not well. I have had a bout of depression for the very first time and I know its a horrible place to be in. I think you need to try new medication such as lyirca and also switch to nortriptyline and take them together. I have just had an appointment last week with the best of the best in Australia and that is what they recommend for nerve pain in vulvodynia. I take these and I have no pain. I am just on a quest to find a cure with out medication. I hope you are able to get a doctor to prescribe these for you. I feel control of the pain is obviously the very first priority. I wish you all the best and am here for you, Z

    zarli

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    Post  tinkerbelle2 Fri Apr 11, 2014 9:45 pm

    zarli wrote:Hi Tinks
    Sorry to hear your not well. I have had a bout of depression for the very first time and I know its a horrible place to be in. I think you need to try new medication such as lyirca and also switch to nortriptyline and take them together. I have just had an appointment last week with the best of the best in Australia and that is what they recommend for nerve pain in vulvodynia. I take these and I have no pain. I am just on a quest to find a cure with out medication. I hope you are able to get a doctor to prescribe these for you. I feel control of the pain is obviously the very first priority. I wish you all the best and am here for you, Z

    Alana I tried Gaba and had really bad headaches and blurry sight when i was on 2x 300mg a day! it was really bad.
    Zarli sorry to hear you've been feeling low too Sad it's very horrible and isolating isn't it?

    I think that is a very good suggestion about trying 2 meds at once! that's what a lot of women who had success stories did. I will definitely be mentioning nori and lyrica to gp. I agree, I hate being on such heavy duty meds!! it's serious stuff. I am going to try some vitamins that some of the girls have some relief with like magnesium and calcium citrate Smile x
    tinkerbelle2
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    Post  tinkerbelle2 Mon Jun 16, 2014 7:22 pm

    Girls I'm now on Prozac.(not for V) and maybe hoping to try lyrica at some stage...
    tinkerbelle2
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    Post  zarli Tue Jun 17, 2014 1:52 pm

    Hi Tink
    so sorry your still looking for relief. Keep going your doing a great job. I know its exhausting trying new things and you can feel like your getting know where but then out of the blue something with work for you. How is your support network around you ? Here for you any time xx

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    Post  tinkerbelle2 Wed Jun 18, 2014 2:13 am

    zarli wrote:Hi Tink
    so sorry your still looking for relief. Keep going your doing a great job. I know its exhausting trying new things and you can feel like your getting know where but then out  of the blue something with work for you. How is your support network around you ? Here for you any time xx

    Thanks Zarl, same to you hon!!! You're doing amazing too.i dont know if you have facbook but HAve you joined the secret fb group yet?Its been really helpful x
    tinkerbelle2
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